Long Distance Caregiving​

Melissa Smith

Welcome to the Caregiver Wellness Retreat podcast. We're so glad that you joined us today and super excited for our guest speaker today, Laura Smothers-Chu. She's the CEO and founder of Befriended Heart, and she works with long-distance daughters to navigate their parent's dementia. She's a certified senior advisor and a certified dementia practitioner. She's got over ten years of experience in health care. And she was a long-distance daughter who just recently, this past year, lost her father to dementia. So, she knows what it's like, and I love our conversation. She actually starts right off with a beautiful meditation. And I found my shoulders just dropped and dripped. It was exactly what I needed. So, very excited to share our discussion today and really tune in for the part where we talk about what the different stages are; she's tweaked them just a little bit to really make a lot more sense and to kind of digest what happens to someone with dementia or cognitive impairment. So, you want to really tap into that just about midway into our conversation.

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Laura Smothers-Chu

Let's take a deep breath in, through our nose. And then when you exhale, try to empty your lungs and feel your stomach get a little tender as you're exhaling out. And while you're breathing in and out, feel your feet grounded on the floor. Maybe if you want to put your --if you're sitting on a chair like I am, --if you want to just spread your arms out on the armrest and just relax your shoulders. And so there will be some thoughts that come in and you want to try to imagine them as clouds that are drifting by in the sky and just let them go and just keep focusing on your breath. I love breathing meditation because it really, to me, feels like a mental vacation. We have all of these thoughts going on in our heads even when we don't realize it, and so meditation is really a nice time to just pause all of those thoughts and really focusing on your breath. It seems kind of boring, but when you do it more and more, you find that it is the break that you need in your day as a caregiver. It's the time where you're not thinking about what you have to do in the future. You're not worrying about the past you’re just staying in the present moment. So, just take one more deep breath. Breathing in, filling your lungs, expanding your back your ribs and then exhaling. Ok.

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Melissa Smith

That was perfect. I felt my shoulders from that first moment you said exhale, I was like, "Oh, there we go."

 

Laura Smothers-Chu

You don't even realize it, right? It's just like automatic. Our bodies are just ready for the day. And you're just like, bright-eyed and bushy-tailed. And you're like, "oh, gosh, my shoulders are so high up right now, I can relax them, you know?

 

Melissa Smith

Exactly. And that is probably a great metaphor for caregiving in general. We as caregivers constantly, --not just the shoulders lifted, but there is this high alert, always. Kind of ready for action, very sympathetic in our nervous system, and until we can train ourselves to just like, take one pause, even just the moment we did just now of dropping shoulders. One of the phrases that I've been using a lot lately is: loosen my grip and soften my jaw. So, whatever it is, I'm doing this, typing with my thumbs, or tensing my face, you know, it just immediately has a ripple effect on my body.

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Laura Smothers-Chu

Yeah, that's so true Melissa. And I, you know, I have had a lot of neck pain lately because I just got onto Instagram, and I just realized how much I'm spending doing this. You know.  I'm looking down and you don't even realize it because we're on our phones for so long and so often, especially as caregivers. Right? Like we're trying to keep in touch with the doctor or talk with our loved ones. So, what I found really helpful for me to feel ready to fall asleep is just stretching, you know. Stretching, like putting my head down here so that it's stretching my neck and my shoulders. But I found that's really helpful and I try to stretch when I wake up, too. And so that actually brings in all those, like, good chemicals in our bodies. And so, it's interesting because it helps us go to sleep, but then it also helps us wake up. So, that's something that's also been really helpful.

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Melissa Smith

Yeah, nice. Well, I'll back up a little bit because I didn't really give you credit for an introduction. You are the founder of Befriended Heart and essentially, you're a daughter, which you coin yourself as a daughter of dementia. And I love how you are navigating this long-distance caregiving as well as the ambiguousness of this kind of disease and how you're helping your parents. I'd love for you to tell us a little bit more about why you started it? I know because of your parents but... And how it's grown from there?

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Laura Smothers-Chu

Yeah. So, I was twenty-eight when my dad was --when I first noticed that my dad was having cognitive issues. And none of my friends could relate, of course, because I was so young. My dad was maybe in his late sixties and I looked all around. I tried to find what experts were saying. Well at the meantime, I had my own full-time professional job here in D.C., and I'm an only child. So, it was really like me doing it, you know, but so what I ended up doing was I did a lot of research as far as like what to expect. And at that point, you know, a lot of people, including my mom, was saying, "well, you know, this might just be age-related changes, he just retired a few years ago." You know, and that's a common misconception that society has in the sense that, like, it's hard to distinguish whether these are age-related changes or if it's signs of mild cognitive impairment. And so, I did a lot of research and actually found a chart that compares, you know, age-related changes to mild cognitive impairment. And I showed it to my mom and I was able to convince them. While she was still not ready to accept that there was an issue with my dad's cognition while he did. I think we were really lucky in that sense that my dad kind of looked to me to be like, "OK, I know, you know, something is wrong. Can you help me?" You know? And so, we went to a neuropsychologist. He got the MCI diagnosis, mild cognitive impairment. And I just started to say, OK, this is our reality now, and so what are the next steps that we can do? And I ended up hitting a wall because for a couple of reasons. So, I would try to watch, like, the presentations online, like during my lunch hour, you know, in my job and everything. And, you know, I noticed that while these people were experts in the dementia field, I felt like I didn't have-- I couldn't get a connection to them, because they didn't actually, they weren't actually, daughters of dementia, or they weren't actually sons of dementia. So, I have a background--my schooling was in psychology. And so, there's a lot of things that I learn in books and everything, but it's different than you actually having that personal experience of knowing who that person was before the dementia set it, right. Because that's just an extra layer of grief and guilt that professionals, a lot of professionals just don't understand. And so, I said, you know, "I want to find someone who's in their 20s, who's on YouTube, that's like guiding me through this." That's basically saying, "hey, I've been there and I know you can get through this. Here's a step by step", you know, and it's not hard to find. Like, it's very clear. I think one thing that's frustrating for us as caregivers is that there's so much. Like we look to these people, these doctors, these experts, right? And we're like, "oh, surely you know the answer. Like, what do I do?" You know, and the truth is, as we're finding, is that no one really knows the answer. Right. Like, no one really knows exactly how to prevent dementia. We have some good ideas. We have some ways maybe to detect it. But, you know, what I wanted was to not feel isolated and to not feel like my dad was "Oh, well, it's unique to him because everyone's unique and dementia." I was like, no, I want rules of thumb. Like, can you give me a sort of bigger idea just to simplify the super intangible, upsetting roller coaster ride that I'm on? You know what I mean? To at least have some kind of idea of what to expect in each stage that's coming up. So, that's really why I created Befriended Heart. And also, too, I noticed that, as you mentioned earlier, that long-distance daughters and sons are really underserved in the healthcare industry. I think that it's wonderful that a lot of associations and organizations for dementia are really focusing on the primary caregiver. And in this case, it was my mom as the primary caregiver who lived with my dad. But it's overwhelming. Like dementia itself is overwhelming. And if you're a primary caregiver and you live with someone with dementia, it's like the daily, -- you know, you have to help them take care of them, to get dressed, or to give them food. Like you can't be thinking... You have no time. You have no bandwidth, emotional bandwidth or time to actually research, like "how should I build my care team, and what do I need to consider? Like what are the legal implications?" Right. So, I knew that. And so, I said, you know what, I can help my mom. You know, I can do this research because as like a late millennial, I'm very good at researching, and looking at reviews, and vetting things, right. Because I do that for restaurants and pretty much anything I buy from Amazon. But I was able to do that and I was able to help. And so, that is what I teach long-distance daughters. That it can be an advantage actually living long distance, which I think the industry, the healthcare field doesn't understand. And they can be giving resources to long-distance daughters, as well as the secondary caregiver, as well as the primary caregiver.

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Melissa Smith

So, what would you say is --so I mean, I can completely relate. When I was going through that, watching my dad, I lived overseas most of the time. So, I would fly back twice a year and I would see massive changes in my step-mom and changes in my dad, too. So, you know, you mention it, it being an advantage. I saw that as an advantage because I was able to offer some perspective where day to day, he couldn't see the cumulative effects and the cumulative changes. Like he would see, you know, there were small little deaths of her personality and things I would experience. But, the overarching decision to finally get more care, he said, "well, I'm not going to do it until she doesn't know me." And I was like, "oh, dad, she doesn't know you." Like, he missed that somehow. And so, long-distance, we were able to really see that. What are some of the other advantages you see of long distance? How can you help?

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Laura Smothers-Chu

So, you spoke to the biggest thing. I think that, you mentioned it earlier, that we're all in survival mode, and especially as primary caregivers because you're with it all the time. And long-distance daughters-- while dementia is always a part of our life, I mean, we think about it every day. ---We are a little bit more emotionally removed. Which I think society tells us, like, "oh, that's a terrible thing." And that's why we, as long-distance daughters, feel so much guilt. Right, because we can't be there. But we do have that big picture perspective. You know, like where my mom, who is the caregiving parent, like she was in the middle of the woods. Like just trying to get through the vines and can't see what's going on. Right. And I'm on top of the mountain where I can see, like, "where does the forest end here? When does the nice calm lake come up, you know what I mean, or what can I expect on this path?" Because I can see it from high up. And that's-- it's not only because of my perspective but because of the research that I did and my background in health care. So, I was working in a healthcare job. So, I knew who to talk to and where to find those resources. I think too. So, in addition to the perspective, I think while we don't feel like it, because we sort of feel like we have our own lives, we have our own families, we have our own full-time jobs. Right. We do actually have a little extra time to take a couple deep breaths. Right. Watch your Caregiver Wellness Retreat videos. Really, we do have that emotional detachment which can actually help us refresh and renew ourselves. And so, we can keep that big picture perspective. I think especially when you're a caregiver, the primary caregiver, you're just struggling to survive, which makes sense, right? Like we don't get nearly as much-- as many resources as we need. That's why I love that you have this non-profit, right. Because health care really does not give us... Their kind of like "you're on your own." Right, which is not fair. And so, I think that it's important to have that, you know, that big perspective. And also, because you're a caregiver, you actually adapt, like you don't even realize you're adapting. So, you talked about this a little bit with your dad, right? Like he adapted to, it's like, "oh, no, my wife still knows me," but he's not picking up on those subtle changes. That are subtle for him, but they're very obvious to us because we come home and we're like, "oh, my God." Like five months ago mom was like this, and dad was like this and now, you know. So, I think that that's a natural human thing in adapting when you're trying to survive. And so, there's nothing wrong with it. But it's helpful to also have that bigger perspective of someone coming back and seeing the changes and sharing them with you. And, you know, that being said, and I made this mistake, that's why I want to share this with you. When you notice, you and your viewers, of course, when you notice those changes that seem very big to you, that you're like, "oh, my God," and you're just really scared and you're seeing everything progress. And you feel like, why does my parent not see this? Like, it's so obvious, right. It's obvious to you. But when you share that with your caregiving parent, or the primary caregiver it's so, so important to just compassionately suggest it. Right. Because primary caregivers, my mom was having people all around her criticize her. There's also this huge stigma about dementia in our society. And nobody really wants to talk about it, or they avoid it, or they don't help. Right. So, my mom didn't need that additional criticism from me. And for me I thought, like, "well I have good intentions? I'm trying to help." Right. But it was the way that I delivered it. I could have been more gentle. I could have been more gentle. I could have been more patient, because I noticed that the more that I tried to push my mom to convince her to do things, the more I got push-back. The more she was stubborn, which makes sense because that's how we are as humans. But it's just something to keep in mind. So, sometimes you might want to plant the seed, and see how it goes, and then maybe if you want to bring it up again, but just make sure that you're gentle and compassionate about it. And that's why this whole meditation practice, the mindfulness practice, helps because you can get in touch with what your intention is before you have that conversation.

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Melissa Smith

 I think that's really important.  I often hear caregivers talk about how frustrated they are with long distance relatives, or relatives that aren't living in the same house. And they're like "they just don't understand what I'm going through every day, they have no idea." Or the opposite is true, where someone from the outside says, "Well, I don't see anything wrong with them, they're fine." And you're like," no, I am with them every day, and I see..."

 

Laura Smothers-Chu

"I'm not crazy. I know."

 

Melissa Smith

And they really do have some cognitive impairment. So, it can really, I think, span the gamut. And I think you really hit the nail on the head in terms of, --you know, this just boils down to really us as humans solidifying our communication skills. You know, knowing when we need to just be and listen, and knowing when the doors open for us to offer, like you said, some compassionate suggestions rather than going in and trying to change everything, because we really don't know. We're not --when your long distance, you really have no idea what they're going through every single day.

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Laura Smothers-Chu

Yes, and I'm so glad you said that. And one thing that I did that I'm so, so glad that I did, I actually took some --I was able to take some time off work, which I'm really grateful for, and I had my dad stay with me for a week. So, my mom drove him. So, I lived, at that point, I lived three and a half hours away from my parents, and my mom. We had a home care companion come in, but I wanted to have that quality time with my dad because he was around mid-stage at that point and he could still take care of himself for the most part. And also, I wanted my mom to just, first of all get some respite, like time to herself. But I could also kind of get a better idea of not only what she's going through, but also to see like, how is my dad progressing? Because sometimes I think my mom would like-- it's just her new normal. Right. So, she would forget to mention like," oh, well, dad can't do this anymore, or dad needs to," you know what I mean? So, I didn't really get like a prep conversation before my dad came to stay with me. But honestly, I think there's something about experiencing it right. Like actually living with the person with dementia. I call it the forgetful parent. Right. So, living with my forgetful parent, my dad, and being like, "oh, my God, I can't take a shower." Like, I can't take a shower because my husband's at work. You know, if I go and take a shower for a half an hour, my dad could go out the door and then, like, down the street and wander around. Like, those are just things that you don't understand as a long-distance daughter, or as a long distance relative until you actually experience it. Right. And so, what I ended up doing is we would take a nap together. And as a kid, I used to, like, just put my legs up on his lap, you know? And so, I did it as sort of like a nice memory, but also it helped me know that if he was to wake up and try to get up, I would wake up as well. Right. So, you, like I said, you don't really understand what the primary caregiver is talking about, like my mom, until you actually experience it. So, I recommend that if you are a long-distance daughter, or son, or a relative really giving that respite to the caregiver and also seeing like, what is it like? And it also gives you some nice quality time with your forgetful parent, or the person who has dementia, because as we know, like we don't know how much longer we have. Right. So, it's always nice to be able to make those memories.

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Melissa Smith

What has been the most challenging stage or phase that you've gone through with your dad?

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Laura Smothers-Chu

So, I like to go-- I don't really use, like, the stage numbers because I feel like it's not the same for everybody. And while this is not a hard and fast structure, but as I mentioned, like, I like the idea of having something simplified instead of being like "everyone's unique and it's different for everyone." Right. Because that doesn't give me an idea of how to plan for things, or to just like conceptually understand something. Right. So, I like to go by early, mid, and late-stage dementia. I think that there are certainly huge challenges in each one of these three stages. And so, for the early stage, it's just like, you know, trying to accept and grasp the reality that your parent is terminal, that they are likely going to-- the dementia is going to progress and they will have a lot of things that they won't be able to do anymore. Right. So, it's kind of like taking in that big, scary reality that changes your life forever. And then the mid-stage dementia, I think for us and for many families, it's really where the majority of the personality changes start. It's where the incontinence issues start. It's also where you want to start saying, like, "oh, I don't know if, in my case, like I don't know if my mom can take care of my dad by herself anymore." Like, I think we need some assistance from a companion or... And also, you start to think like, "is this a good time to move them into a memory care?" Well, again, this is like different for every family, but in general, mid-stage dementia, that's the longest stage. And what I'm finding is that the daughters that I'm working with, if they told me originally that their forgetful parent was in early stage, they're now in mid stage. And that's because the pandemic has unfortunately caused a lot of social isolation for everyone. Of course, we're all feeling it, right. We have no social plans. We can't really see anyone safely, but also especially for people with dementia. And it really reminds you, like how important those human connections are in-person to everyone as humans, but especially for people with dementia. And so, that's what I'm noticing, is that many daughters' forgetful parents are now in the mid-stage. And then, of course, the late stage, that's when we lose our parent. And actually, the end of this month will be the first-year anniversary of my dad's death. So, I think we're always daughters of dementia. I think we're always going on this journey. And I'm, of course, like in the major grief, and like processing everything that happened, and trying to teach people what I've learned. But yeah, I think the last part is just like really letting go and um yeah. And realizing that-- I think this is really important --that even though the dementia has progressed and taken our forgetful parent that they have and will always be the same person they always were.

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Melissa Smith

That's a really beautiful thing to remember, and that's really true. I know that was true of my step-mom, that there were just elements of her that were still alive and a spark. And that helped me remember, you know, more joyful times and the memories that we wanted to continue to collect. And when you mentioned grief and letting go, you know, that is a little bit controversial in terms of the grief arena. I almost look at it like a little bit like a boat. Our grief is inside, or is the boat. And, you know, we're navigating something that is totally non-linear. I think about those that I've lost and, you know, at certain times of the year, things will come back and feel really fresh. And then other times of the year, it's just barely in my memory and in my life. And I think what I'm finding most of all is that we grieve because we actually had such a deep love. And that is really helpful to kind of still cling to that while releasing more guilt, and burden, and all of those things. But not necessarily the grief.

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Laura Smothers-Chu

Right. I agree. And I think when I say letting go, I mean letting go of my dad's physical body, his presence, right. But I, mean I still feel his presence and I never-- I haven't really had a loved one die that's been so close to me. And it's really interesting how much I feel him here all the time. You know. I love that, that's possible.

 

Melissa Smith

Yeah. And it's hopeful, actually. Well, I'd love you to hear-- we're going to talk, and just as we close, about some of the offerings that you're doing about mid-stage. And I know you're offering some things that are of no charge, which is an incredible service to caregivers. But before we do that, I'd love to wrap up with maybe if there's just one nugget or one really-- and that you'd love for caregivers to walk away with today. What would that be?

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Laura Smothers-Chu

Yes. So, I think, it's hard. But I think this one is especially relevant right now as we are-- we just got out of 2020, which is very difficult for many, many reasons for our country, for the world. And we're also still kind of in it, in 2021. We certainly have some hope and some light at the end of the tunnel. But I think it's a nice reminder to help us recognize in our lives and in the stress that we're feeling. What can we control and what can we not control? Right, and so, you know, we obviously can't control the dementia. What can we control in this? And that's kind of what I'm talking about as a long-distance daughter. What can we do? We can research to see what's coming up next? What can I start to expect? What can I plan for in the future? Right. Because usually no one else is going to do that. And you can initiate that conversation. Also, too, with a pandemic like we obviously can't control the pandemic. We can't prevent that from affecting our social plans. But we can wear masks. We can wash our hands. So, it's really important that especially in this journey that we try to focus on, "OK, what can I control in this situation?" That I think will help give us our power back, because when you feel like dementia is giving you no choice, you are just giving it all away to that. Right. And as we know, I mean, it depends on the journey. Right. But some journeys can last up to 10 years. And I mean, do you really want to give your power away for 10 years? I mean, there's so much other stuff that's affecting you negatively. Right. So, really trying to shift your perspective and try to find, "OK, I can't control this. I can't control this. I can't control this. I may be able to control this." And it actually speaks to what my resolutions are for 2021. I had like a list of things, as I'm sure many of us did. I want to do this and I want to do this and then, like the pandemic, put a monkey wrench in everything. So, what I'm doing this year is I'm just having one word of intention and my word of intention is space. So, as I'm getting through, you know, I'm trying to grieve my dad and his passing, giving myself space to feel that giving myself time, trying to put in more mindfulness meditation into my schedule and trying to prioritize that, things like that. So, that's an example. A couple of examples of how you can focus on what you can control the situation.

Melissa Smith

Well, I love that you mention letting go of the list, because I think often times there's an illusion of control that we have even over, you know, the things in our life. But I think what you honed in on is, what is it about me? I mean, really, at the end of the day, my emotions, my actions, those are the things that I can control. I can't control someone else, or I can't control a pandemic. And all of these unexpected things that have happened to us this last year. So, beautiful reminder to make some space, right. Just clear something off instead of adding to your list, of what service will that be to your stress, to how you function as a caregiver? It just piles it on more. So, at the very beginning of our talk, you mentioned, just in passing, about a care team. And so, the caregivers that are that are chatting, I would love for you to think of Laura as part of your care team and the Caregiver Wellness Retreat as a part of your care team. So, care team doesn't always have to be someone that's right there in your space, but is a resource that you can reach out to. So, I'm super excited about what you're having to offer for mid-stage dementia. Will you just talk, just a little bit about it?

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Laura Smothers-Chu

Yeah. Yeah. So, I'm glad you mentioned the building a care team, too. So, if you go to my website, it's www.joyindementia.com. So, it's all one word. And you will actually-- there will be a pop up that will come up that is actually offering a free guide. So, it's the ultimate guide to building your professional care team. So, I think that we as caregivers hear from a lot of professionals like, "oh, just build a care team," but we're like, "how do I do that?" Right. So, this is a really in-depth guide. It's actually offering a whole lot for free. It's actually not going to be free for much longer. So, I definitely recommend getting it as soon as you can. But once you are on my email list, I will also let you know about a free class that I'm giving at the end of the month, all about mid stage dementia. All the things to expect. So, not only personality change, and what examples of that in my personal life, and also my professional life. Melissa probably mentioned this in the bio, but I'm also a certified senior advisor. I'm a certified dementia practitioner. So, I'm coming at this from a personal and a professional perspective. But I also talk about how do you manage the dynamic between you and your caregiving parent? Right. So, I touched a little bit about that, about compassionately suggesting, but I go into it a lot more in my mid-stage class. So, I would love it if you could check out my website and sign up for my email list and you will get that guide for free. And you'll also find out the date and time for my mid-stage dementia class.

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Melissa Smith

I love this. And I'm so grateful because, as I mentioned in the beginning, it's such an underserved population. The number of caregivers that are growing in your age category are just astronomical. The sandwich caregivers, those trying to raise children, and take care of the parents as well is also growing. So, there's just a tremendous need right now. And you're really filling a wonderful gap for that based on your experience. So, thank you for continuing to do that.

 

Laura Smothers-Chu

Thank you. Thanks for inviting me to be here. And it's nice to see you all.

 

Melissa Smith

Fantastic. All right. We'll look forward to having more from you soon.

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Melissa Smith

Thank you for joining us today for the Caregiver Wellness Retreat podcast. It's always a joy to spend time with these amazing people, and Laura is no exception there. She is just truly a light in this very, very dim world of dementia and a great reminder that there is a way for us to hold our loved ones on the other side and be able to kind of reconcile feeling their presence and also knowing and releasing who they used to be. So, it was a beautiful conversation. Thank you so much for taking time to join us. You should check out our website at caregiverwellnessretreat.com. We have a retreat coming up on January 29th. And if you are listening to this way past then we have it already up on our website as instant access. So, if you go to caregiverwellnessretreat.com, you'll find there our listing of all of our virtual retreats, which are completely free. And because we make them free to caregivers if you feel so inclined and this year has blessed you in small or large ways, we would love for you to share that with us and donate to Caregiver Wellness Retreat. We are 501(C)(3), so any donations, you will certainly get a donation receipt. We wish you, health and wellness and a peaceful and easeful year.